Friday, August 24, 2012

The Facebook Meme Fine Print under "Disability"

Why spoons? You caught me. It's a secret code. Click here to find out what it means.  Photo Credit: Alvimann via Morguefile



I have something to get off my chest today. And, because I'm now stuck in bed with my head wrapped in ice, my grey matter compressed within a tight bit of fabric, to dodge the ordinary and still unusual pain of empty tooth sockets, I'm just going to say it. Consequences be damned. I have a wish today. This is it:

I want people to please stop posting inspiring photos of disabled kids or adults running in races or winning medals with captions that say things like "The only disability in life is a bad attitude."

Why, you ask. You are all lovely people. You mean well. You have sound ethics. You have no wish to offend. All this is certainly true. I know you inspirational-meme-posting people. These are not the bad folks. These, my friends, are the good ones. But. Please, anyhow, I am asking you don't post these images anymore with their accompanying inspirational quotes. 

Here's why:

The only disability in life is not, in fact, a bad attitude. There are many other disabilities that one can have which will make it difficult to live life on terms negotiated in the Usual Life Contract. There are many people in many places, near and far, with disabilities more difficult to bear, physically or medically, mentally or emotionally than those in my inner circle, but I don’t want to speak for them today. I hope they can, as they are able, speak for themselves and for their loved ones. I will speak only for my own family. We are no perfect example. We are just all I know.

We do know something about disability. In my own house, many of the disabilities are relatively minor: for instance, learning problems such as ADHD and Auditory Processing Disorder. Minor, yes, but real enough to cause actual pain and difficulty to those who have to live with them. Real enough to require difficult decisions. Real enough to be recognized under the Americans with Disabilities Act. In my house, we also live with Dyslexia. We live with Chronic Pain -- severe enough that we are now find ourselves supporting our kids on one income.

We live, for the most part, with disabilities that no one can easily see. We all have the use of all our legs and arms. We have our full cognition -- squirrely as we are -- but we are all, to some extent, disabled. We have -- all of us adults -- also worked with disability in our professional lives. My mother worked twenty years in special education. I worked two as a one-on-one instructional aide, and my husband spent five years working in a group home for autistic adults. Our lives have been touched time and again by those that cannot do what “everybody” can do. I think, too, that in this we are not so unusual a family.

My husband and I know and teach our kids that attitude is critical. Attitude is what teaches you to advocate for yourself. Attitude is what teaches you to shoot for the stars. Attitude is also what teaches you, as often, to accept your limitations with a smile and be truly grateful for what you have. Attitude doesn't, though -- and this is important -- make you not disabled. It doesn't give you the impulse control or the attention span of a child unaffected with ADHD or the reading prowess of a non-dyslexic adult. It doesn't let me run for exercise, with the exhaustion and pain of my fibromyalgia, much as I might want to. Attitude has taught me to love life without everything the average Facebook meme poster might enjoy: the morning run, the camping trip, the energy to spend with friends. I love life with my disability, not in spite of it and not while I'm pretending it isn't there.

Is this semantics? I don't think so. If you think the only disability is attitude, you won't get around to giving me a call to see how I'm getting along. Once I can no longer run with you, I will simply drift out of your life. You see me as the author of my own experience and so your compassion -- the hard work of maintaining friendship -- isn't needed.  If my kid has a can-do attitude, you will think, he too can succeed in what all kids are asked to do in school. Witness this anonymous little girl with the artificial legs. If she can do it, what's our excuse? Anyone who puts their mind to it can achieve, right? Like every other kind of banal prejudice, these Facebook memes are a window into something of our collective ignorance. They can, if we let them, reveal what we assume.

Wikipedia says: "The "ableist" societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm [witness the inspiring disabled athlete] or should keep their distance from able-bodied people." (Emphasis and insertion added by me.) Close your eyes and think of the most inspiring ill or disabled people you know. What is it that inspires you? Is it that they have found a measure of peace with their lives or that they have somehow overcome the challenge of their disability? Are they supposed to overcome? And does that overcoming necessarily mean looking or behaving more like you?

In this thoughtful article, by Cristina Hartmann, the author goes further in explaining why inspiring pictures of people with disabilities are generally offensive to disabled folks. The answer, of course, in short, is the same as why it is generally offensive that all African Americans should be inundated with images of highly successful black folks as “models,” and why all women should not be bludgeoned with stories and magazine spreads about "having it all." Most of us aren't going to "have it all." Most of us aren't going to want to train for the Olympics with two artificial legs. If people do that and it inspires them, then that is inspiring to me as well. I am inspired by people working for what they want for themselves, on their own terms. But these racing, medal moments are not the ideals for all of us.

The rest of us want to be seen for who we are as well. 

Let me share some victories from inside my disabled life. The victory of my getting up and getting another day under my belt, even when my discomfort climbs over eight on the pain scale. My learning disabled son's victory in reading a passage out loud correctly without tears after skipping lines six times before in his attempts. My husband's reading enough material to take and pass a test for his IT certifications. My child with ADHD’s ending the day knowing the location of his wallet. All of these acts are heroic to me. We fight the fight each day. We smile and enjoy the journey. We admit our limitations, and we choose which battles we will wage. I often win when I remember that I cannot do it all, and I decide to go ahead and skip that potluck, as much as I wanted to see my friends. I win when I have had the strength to attend to my crying child because I first took the time to rest. My seven year-old wins biggest when he falls off his bike, stands up and says, “Mistakes, mistakes. That’s what it takes!” because we’ve taught him that it’s OK to screw things up.

To really see that victory you have to see the disability. You have to know how hard-won is that failure without tears, or the willingness to let go of something social in favor of taking rest. Don’t be afraid to look, to ask. And please don’t forget we are out here. One in five Americans lives with a physical or mental disability, one in ten of them considered severe. When you are posting your motivational memes and daily doses of runner’s glee, it is wise to remember that they are not always viewed by someone with a body that will ever run. And so I invite you not to political correctness -- because, honestly, who gives a crap -- but to an appreciation for your membership in a whole human family; gay, straight, black, white, immigrant and aboriginal, faithful and empirically-minded, able-bodied and disabled. Next to you is always somebody you wouldn’t want to hurt. It bears thinking about.

And maybe that’s the hardest thing of all, just adding that second step.

1. See. Laugh.
2. Stop. Think.
3. Repost. Or not.

Thanks for listening. Please share your thoughts. What does “disability” mean in your life and from where do you draw inspiration in tackling hard things?

34 comments:

  1. I'm not certain what to say....I know this was a well meaning, articulately written piece, and well informed. Your task in life is difficult, to say the least. When I post/repost something that inspires me I tend to forget how others may look at it. Thank you for sharing your thoughts and feelings. Very well written piece.

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  2. Thanks very much for reading and posting. To be honest, I think we ALL do that kind of thing, me no less than anyone else. Like I said, these really are the GOOD people. It's an easy mistake to make.

    And to be honest, I think my task in life is just my task in life, not necessarily any more difficult than yours or anyone else's -- just different, like all of ours are different from one another's. People, disabled in big ways or small, or completely able-bodied, tend to deal the best they can with the cards they have been given. I think my family does that. We have our trials, love our lives and are grateful for what we have. It can be very difficult to communicate the experience without adding a layer of what seems like self-pity, but, for me -- truly -- it's just the facts and part of the special beauty of our lives.

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  3. Excellent and inspired. I have a work-in-progress centering on this very theme and you've helped me clarify the message I want to express. Great post!

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    1. I'm so glad it got at something for you. It was very hard to nail down -- like Jell-O. Can't wait to see what you have to say as well.

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  4. I've never reposted or posted those posts out of mixed feelings about them. I do believe this post has helped me form my decision. (: Thank you.

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    1. I'm glad, Larissa. It was hard to nail down what bothered me so much and I'm still not sure I completely got it, but I know exactly what you mean about those "mixed feelings."

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  5. for some reason the word, 'meme' makes me crazy. I blame Ken Wilbur's overuse. Most people don't know what it means and it seems like every writer I read uses it. It reminds me of the popular use of trope.
    This has nothing whatsoever to do with you Tara or this piece of writing which is clear and precise and a well thought out opinion.
    Other words grate on me too---inchoate (joan didion's overuse), poseur, gratuitous. Just me.

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    1. I think I only know the meaning of one of those words, Benette. I must be reading all the wrong things. ;) I admit to never having read Wilber either, so for me "meme" is generally something contagious over social media, usually with an associated cat.

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    2. i guess Richard Dawkins is said to have started the usage of Meme. He uses it in a cultural way---that humans transmit certain 'memes' over time---habits, ideas, patterns that get entrenched in our culture. Ken Wiber is tedious after one book--he has interesting and significant thoughts, though he is too wordy and circular.

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  6. Thank you, thank you, thank you! It's ridiculous to assume that if we all just try real hard and "turn that frown upside down" we'll be able to succeed at exactly the same things. We all have our strengths--and we all have your shortcomings.

    I have been crippled by anxiety at times in my life. It didn't always show and given the choice, even knowing how hideously difficult it was, I'd still take that over some of the challenges people face. That doesn't mean it was a picnic and it doesn't mean that it didn't come at significant cost, but over time I've come to realize that the anxiety is as much a part of me as the things I prefer. Accepting me means accepting it, and so I do.

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    1. I appreciate what you said, Beth. I always try to think of these parts of ourselves as the section (or lazy) lines in a Navajo rug, the place where you can see where the creator was at work, joining the two parts. They are proof of authenticity. We all have them -- these flaws, if not outright disabilities -- and they make us who we are.

      If someone gave me a cure for fibromyalgia tomorrow, I would definitely take it, but I would still be glad for everything that my illness has shaped me to be. Part of what it has taught me is to be still, to NOT fiddle, to rest -- things which my personality really struggles with. I wouldn't go so far as to say that for everyone in all cases, their disabilities are something they would want, but I will say that I think we are all beautiful in all of our achievements, however small and hard for the world to see.

      Thanks as always for your thoughtful comment.

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  7. I have a daughter with nonverbal Autism and like you're saying I don't need a constant reminder that my daughter is Autistic. I'm not making her the poster girl of Autism in my community. I just want her to be a kid and enjoy her childhood.

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    1. I think you put it very well. When we are always seeing these images that are supposed to be inspirational, the message embedded seems to be that our ordinary victories are not enough. Which you and I know they are. Thanks so much for sharing.

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  8. Tara: Thank you for sharing such a heartfelt piece. It’s a double-edged sword, these inspirational stories that cannot be the reality of others. I don’t often pass them on, but I don’t think I’ve really thought about why.

    Our family also has invisible disabilities – we have an almost 13 year old who not only has ADHD-combined type, but he’s having to learn how to deal with chronic pain and fatigue because Ehlers-Danlos Syndrome is messing with his joints and muscles. There’s always this walking on a tight-rope moment, wondering what perceptions he has, wondering if it’s going to be a good day or not (it's mama that sometimes worries these worries, but swallows them down). But even with emergency room visits in the dark of night, and fatigue that shouldn’t hit anyone so quickly, EDS hasn’t knocked him down. It may in the future, or it may not. Attitude doesn’t make the pain go fully away, or allow him to run as long as his peers, but it does allow him to not hide in a corner when he's feeling not his best, and it allows him to run and to know when to stop running. He’s got a great sense of humor, and sense of self. I know he's sometimes angry and frustrated (which is why he is going to a pain clinic for cognative behavorial therapy and to learn multiple skills he can use to manage something that may always be a part of his life). He knows kids the same age as himself with EDS that have fewer issues than he does, and others who have more issues, and they all learn from each other, though they don’t even get together very often. Just knowing that there is someone else out there that has a similar problem when you are a kid or adolescent (or adult!) can really shape so many things, especially when there isn’t anyone in your school (work) or neighborhood who knows or understands.

    It’s when “well meaning” adults (or kids) think he should be able to do something, because nothing “looks wrong” on the outside that can begin to wear away at the soul. But yet, he often tries. So when one has an invisible disability that hinders their participation does one tell their story, not as an excuse, but as a teaching moment? Does one just smile and say “I don’t really feel like it now”? Does a parent say "Don't do that, you'll regret it if you do." ? I have no answers. In our case, I try to be positive and let him figure what works best for him. Each person is different. Grabbing on to what is good in the moment seems to help, and if that is attitude, or just self-preservation, I don’t know.

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    1. Thanks for such a thoughtful comment, Tracy. I think there are these particular challenges that come with a disability that can look so much like being well. I'm sure there are just different challenges with the other kind–where you are markedly easier to judge and exclude on sight.

      With the invisibly disabled, I think it is very, very hard for people to realize that this person who looks so well cannot just WILL themselves to do whatever they want. It's obviously enough of a special challenge for a lot of us that we use the whole hashtag/conversation #bydls (but you don't look sick)to talk about it with one another.

      I deeply empathize with your description of your son's positive attitude. It makes all the difference, doesn't it, and yet it still isn't fairy dust. I also relate to your uncertainty. I think NONE of us have the answers. I believe all any of us ever wants is to be really seen and heard. Again, thanks for your thoughts.


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  9. Well written!

    I used the Spoon story to explain fibro to my family when I was diagnosed. It explains it quite well.

    Positive thinking my A$$, is what I normally say (in my mind) when confronted with these well meaning do-gooders and their inspirational memes.

    What I have had to work with myself on, is that when I DO have a good day and have some extra energy to actually meet a friend for a coffee or lunch or a walk, is that it is perfectly okay to go have fun. It is perfectly alright to feel good. There is no law that forbids us to ever do anything fun ever again.

    I am surely not the only one who are met with hateful remarks and comments on "Wow, how come you are laughing and looking so happy, you who have fibro?!?" As if we are doomed to spend the rest of our lives in miserable unhappiness.

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    1. I agree. It is an amazing piece of writing, that spoon theory. It does explain chronic illness amazingly well. I also sent it to my family and it helped my mom a lot.

      Your comments reminded me of an experience. At work (a school)one day, I had the staff nurse turn to me and say, all smiles, "It is so good to see you with a smile on your face." I'm sure she meant to try to connect and empathize–and I have tried to remember that–but I cannot recall when I had last felt as patronized as I did at that moment. The weeks before, I had dragged myself to work, barely able to stand, in head-splitting pain, to do my job as well as I could. I was in a terrible flare. I can't know what she meant, but what I heard was that I needed to have a smile on my face no matter what my pain level looked like, not just when I have the kiddos in my classroom (when I always did have a smile), but in those moments I was simply walking in the hall, wincing in pain. It made me feel deeply and irrationally angry.

      Somehow that moment–that lack of understanding between what kindness she may have meant and what slight I instead received has stood for me for the difficulty of communicating across my invisible disability, as land-mined for the poor soul who is tossing a stray comment my way as it can be for me.

      I know what you mean, too, by those remarks of disbelief. "But you look so well. You look so happy." People say these things all the time, unable to believe I could ALSO be in pain. I think it speaks to how hard it is to really SEE what a person's experience may be by looking at their outsides, try as we might. I look happy because I am. Pain or not, I am. That is the simple truth.

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  10. @Cara, I get similar responses when I'm open about my dealings with depression. "But you always seem so happy."

    I think there is absolutely something to be said about a positive attitude, and as you said, Tara, it's about dealing with whatever life brings your way. It's about overcoming fear and dread with being able to make decisions free of those inhibitors. There are small heroics every day and people are amazing in a million ways.

    People are also ignorant and insensitive, though well-meaning, in a million ways. I learn something new every day about how to communicate with people and how something I say affects the person next to me.

    And some days, I want to just pull out of all the conversations. I've spent the last week seriously considering deleting everything from my Facebook account. I'm positively exhausted by all the chatter. The well-meaning, the spouting, the ranting, the tedious, the inane ... I'd rather go read a beautifully written, thoughtful blog post.

    Thank you for articulating these things and helping me become less ignorant and insensitive, and more aware about my good intentions.

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    1. Often I read your comments, Margi and just want to post "Yep." This is one of those times.

      Part of what I think I failed to get across in this piece and should have is that, naturally, I am as likely to say or post something that may end up hurting someone as anyone else. I don't really want to come off as morally superior. The fatigue I sometimes feel with the machinery of being human–this unintentional hurting, this being unintentionally hurt–occasionally really gets on my nerves. I originally wrote this piece in a much snarkier tone and titled it Reason #475 I Should Not Go on Facebook. I try not to be a walking bruise, because that is a conversation that is going nowhere, and yet I do find it worthwhile to examine some of these things. I think our human progress ushers from a lot of these missteps when we learn to look well.

      I wonder: Are we looking well? That is all I can hope.

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  11. By the way, spoons? EXCELLENT analogy. How did I not know about this until now?!

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    1. It's awesome. She has some other great essays, too.

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  12. Excellent post hon and great conversation everyone! Reading everything here, made me think of an experience I've had in Tae Kwon Do. In my late twenties, I became a compulsive over-eater and ballooned to nearly 300 lbs. (My healthy weight is closer to 185 lbs). I also have chronic asthma (for 33 years now). I have chronic back problems (from being hit by a car when I was 18, which also knocked out my 10 front teeth). Anyway, a few years back, I joined a Tae Kwon Do class and I have been at it ever since. Tae Kwon Do is an incredibly vigorous workout. Sometimes, esp. during allergy season, I have serious problems with my asthma. I love Tae Kwon Do and push myself really hard, sometimes to the point, where if I'm suffering from asthma, I have to sit down on the side, because I can't catch my breath and I'm wheezing really hard. Anyway, for a period of times, a well meaning person, whom I like, would frequently give me a hard time and make snarky remarks about my "asthma" like it didn't exist or about how I'm always "suffering some injury." I bit my tongue, but I was infuriated. Far from being lazy about class, I go even when I probably shouldn't, because I love it. I couldn't talk rationally, so I said nothing, but I'll say now, what perhaps I should have said then:
    Given that I have chronic back problems, asthma, and was morbidly obese,I think it is extraordinary that I was even in Tae Kwon Do. That I could find the inner strength to push myself to the level of achievement I did. (I have since earned a black belt). So don't give people a hard time, because of what you assume they should be able to accomplish. Remember you don't know! I have failed at this too. I've actually seen myself as that no-legged athlete and I've inflicted myself on others, in Tae Kwon Do.

    We had a student, who has severe Autism and he ended dropping out. We expected behavior from him that isn't reasonable to expect from someone with severe autism, who is just entering puberty. He was trying his best and he got frustrated. He dropped out. I played a role in this and I regret having done so. I needed to see him for who he his and to appreciate the work and effort he put in and to acknowledge the accomplishments he had.

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    1. I just always want to say some lame thing about walking a mile in someone's damn moccasins. It's not very original, but it's true. We never, ever know what someone may be going through underneath whatever package we see. I think that's why I find trite advice to be so generally offensive.

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  13. I really wish that a positive attitude would make my disease stop. Wouldn't it be awesome if just because I've got that can-do spirit, that my muscles would work again? All of life should be so simple.

    It should be as simple as the simple minded people posting such ridiculous inspirational meme photos on Facebook. You are far nicer than I am. I don't really care about their good intentions. They are shallow and have no idea what it means to be disabled.

    All of the people in my life not related to me HAVE just drifted out of my life. I can't run with them anymore, so to them, I don't exist. These are the same well-meaning folks posting the ignorant inspirational photos on Facebook. These are the same folks who, if they see me, tell me how good I look. As if my lack of physical disfigurement means anything.

    My victories are small, and they don't mean a thing to the people who post photos of inspirational disabled people or to those who are no longer in my life because of my disability. But they are my victories. I work for them myself and only those who truly know me and love me will ever have any idea how hard it was for me to achieve them. And that's ok. Since becoming disabled, I've learned that there are only a few people who matter.

    And I seriously ignore all those silly inspirational photos on facebook.

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    1. It's awfully hard not to feel bitter or angry, isn't it? It is such a painful experience, losing people you thought were good friends when you need them most? It has been one of the hardest things for me. Maybe because of that, I end up valuing some of my internet friendships all the more. People are "there" for me, because "there" is someplace I can actually be–at my computer!

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  14. Great post, I think you really hit the nail on the head. I said a bit of this in a PM reply to you on Twitter, but I figured I'd reply with my verbose thoughts over here too. ;)

    Those sorts of "inspirational" memes drive me crazy, for exactly the reasons you point out. I think it also exposes an interesting divide between "disabled" and "chronically ill" that even those within the disabled/ill/spoonie community don't always vocalize. That is, I think there's a huuuge difference between a physical disability that doesn't involve pain, fatigue, or deterioration, and chronic illnesses that do. If you take two "disabled" people, both who use wheelchairs, one who is paraplegic from a car accident several years ago and one who is living with relapsing-remitting MS, their experiences are going to be *vastly* different. They may be offered a lot of the same accommodation under the ADA, but the person living with the degenerative illness has to deal with something much different than the person living with paraplegia.

    I try to stay away from any friction between the two communities, as the stress from anything like that only does bad things to my own degenerative illnesses, but I really do feel that at least some of this BS about attitude comes from those living with non-illness-based physical disabilities. Without the pain, fatigue, continual gradual deterioration, and unknown future that comes with chronic illness, well yeah, maybe the only true disability is a bad attitude. But when I'm freaking out about losing yet another life activity to my illness, it's not because I have "a bad attitude". When I'm depressed because I've been in constant, unrelenting pain for the past decade, that isn't "a bad attitude" either. When I'm having a panic attack because every minute of every day I feel like I'm treading water and not being able to keep my head up, because every minute I feel like those terrible dreams where you try to run but your legs won't move fast enough, that's not something anyone has the right to tell me I can fix by just by looking on the bright side of things.

    I'm broken in ways that can never be fixed by a wheelchair or a handicapped parking sticker. My body is attacking and killing itself in ways that have baffled 25+ doctors, and my three separate illnesses/conditions interact in ways that no one can predict. I could volunteer to amputate my legs and get cybergenetic metal ones, and it wouldn't do one iota to fight my constant pain and fatigue (though the surgery itself would put my life at risk). So yeah, I'm more than a little sick of people who don't live in constant pain and fatigue telling me that if I just had a better attitude, I could run in the Olympics. I gave up a desk-based career that I absolutely loved because of this illness. I've given up friends, hobbies, trips, independence, frickin *pants* (no seriously), and a whole other list of things to this illness. No one has any right to tell me that a better attitude and a pair of metal legs would fix me.

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    1. Sorry I haven't messaged you back yet, Samantha! This wisdom tooth extraction thing has made me a little batty. I knew you'd have something interesting to add. I never really thought about the difference between being visibly disabled and invisibly disabled in as much depth–probably because I have only been chronically ill for a few years. I have been aware of the difficulty that my LOOKING well poses for me in navigating my daily life, but that's about as far as I've thought. Thanks for giving me something to chew on. Let me share a memory that this brings up:

      When I flew back from the Erma Bombeck Writer's Workshop, I was really sick. I had survived a whole traveling weekend, mostly on adrenaline. I don't sleep well in strange beds and sitting in workshops was physically demanding for me, but I'd weathered it really well. I could feel it all falling apart on the trip back. I had to fly from Dayton to Atlanta and then from Atlanta to Albuquerque. I had a terrible attack of costochondritis in the Atlanta airport, but I'd never been diagnosed with it before, so I didn't know what it was. It is a common fibro thing wherein the cartilage around your ribs becomes inflames and you get a terrible chest pain and shortness of breath. It feels a lot like a heart attack, or makes you think you're having one. I was light-headed and afraid I might fall down. My vision kept clouding up and all I could see was a little tunnel that was clear. Noises sounded distorted and painful. I had a migraine and my whole body hurt like I'd been hit. At the last airport, when we called to board, I'd had to wait 20 minutes inside the little tunnel connecting the gate to the plane and I was afraid I'd pass out this time. I thought about trying to find a medic, but I knew it wouldn't turn out to be a heart attack, so what was the point?

      Deciding to be proactive, I got up and approached the personnel at the desk to ask that I be allowed to pre-board, but they kept ignoring me. Other people who were more assertive or older or more obviously in need would walk up and they would assist them. I felt sick and I am not all that assertive when I'm well, so I never got to talk. After ten minutes of this, they called for pre-boarding, including anyone who needed extra time or assistance to get on board. I decided that I just needed to go. I got in line and people LOOKED at me in that way as if I was an interloper. They LOOKED at this healthy, thirty some-odd year-old woman getting in that line, getting special treatment, and almost glared. Under my sunglasses, tears began rolling down my cheeks, half from embarrassment and half from pain and exhaustion. I was allowed to board with no questions and, as I passed, I heard them make an announcement that pre-boarding was ONLY for those with disabilities and who needed extra help. I managed to get on the plane and no one offered to help me lift up my suit case to the storage. No one offered anything but glares. I decided that under no circumstances would I ever pre-board again, no matter how I felt. I just don't LOOK sick enough.

      It was an experience that has given me a lot to think about.

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    2. I definitely sympathize on the costochondritis -- that was one of the previous diagnoses I'd received that has since gotten lumped into "all your joints/tendons/cartilage/collagen are weird, and it's probably genetic" (aka probably Ehlers-Danlos Syndrome, but without a family history [though my siblings are starting to be affected too] it's difficult to get a solid diagnosis), so I've been there, wheezed through that too. Such a terrifying feeling. :P

      It's interesting that your reaction is to never use pre-boarding again. I've done that myself plenty, sworn off something after it goes terribly wrong, and I can see the logic to it: sometimes the stress of dealing with small-minded people is worse than not getting the accommodation at all. (I have, in fact, been having this argument with myself over using Disability Services at DragonCon this year, with valid points on both sides.) But I've been trying to make myself push back against that desire to be as unobtrusive as possible, especially when I'm not quite yet at the end of my rope. Screw the small-minded, ableist idiots. Accommodations for the ill and disabled are there for a reason, and we shouldn't let them shame us out of using the accommodations we need and have every right to.

      So I'm trying (and often failing) to state what I need clearly, calmly, but loudly if they appear too stupid to grasp that someone who looks well might really not be, to state it up front, and to state it before I'm about to fall over and thus incapable of speaking clearly/calmly/loudly. I try to be polite, but I also try to put a little unspoken dare in there, daring them to say I'm not sick enough, not disabled enough, to deserve whatever thing it is that I *need* that I'm asking them to provide. That silent dare is usually enough to get all but the most idiotic customer service rep moving.

      On the other hand, your story also reminds me of why I always use my cane when I fly. Not only because after even an hour-long flight, I can't get out of my seat without using it, and not only because it generally deters the random passerby from running into me (and likely dislocating or subluxing a joint in the process), but also because many people need to see a prop to make a disability or illness valid in their minds. It's stupid, inconsiderate, and childish, but well, that pretty well describes most people working in airports, doesn't it? ;)

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    3. I'm sure you're right, Samantha. Often, in stressful situations, I decide what I'm willing to do based on the level of anxiety it produces in me, not on the basis of what would really be the right thing. I did wish I had a cane or a t-shirt that said something like "Invisibly Ill." It was a weird conundrum. My husband definitely felt I should continue to ask for pre-boarding if I need it. I'm just not sure it's worth the mini-panic attack to me. Not that any of that is right or fair. I SHOULD be able to pre-board. But I guess it's up to me how assertive I want to be. And I don't usually feel so assertive.

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  15. I wouldn't have agreed with you a few weeks ago because I never noticed those memes. Training for races is not easy with fibromyalgia. While some friends train just as hard as I do, they don't live with the condition I have to live with. Exercise invigorates them, while it absolutely exhausts me. I'll keep doing this for years to come, but it doesn't come easy. My planned day of recovery is sometimes extended to 2-4 days. It kills me. While my spirit wants to hit the pavement, my body can barely move. I am left surfing the net on my bed. And you know what I see? Those damn memes! Catch me at the right moment, and you can take a great picture of me in a moment of victory, and that can be captioned to inspire others. Catch me ten minutes later, and I am icing my body while in fetal position.

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    1. I can vividly remember feeling that way, Nellie, at the point when I was still able to run but my fibro was getting worse. The mind was willing and all that....

      Congrats on all your training. When's your race?

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  16. Another article relating to what not to say to people with chronic illness: Talking to someone with a chronic illness, and mentioning that this week is National Invisible Chronic Illness Awareness Week

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  17. The positive attitude myth is a favorite of mine (in which the word "favorite" is understood to mean something with unparalleled ability to annoy the crap out of me). Have I previously recommended Barbara Ehrenreich's book Bright-Sided to you? I have previously recommended it to lots of people so it's hard to keep track. The subtitle is "How Positive Thinking Is Undermining America." It's a well-written and well-thought-out look at the dangers of having too much faith in the "power" of positive thinking. There are several chapters which relate to health and wellness and kind of touch on what you're talking about here. Excellent read.

    Sometimes I think the "well-meaning" people are harder to cope with than the straight-up, hateful, ignorant assholes.

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    1. Well, you said it so I didn't have to. ;) I love that book. And it's not that I'm such a grumpy person. I just hate spin. I like truth. It has so much more heft to it than spin. I think you can't soap-bubble-chat your way to genuine happiness (or at least I can't). For me, the way there is through and the "through" itself, although painful, is as rewarding in its own way as the happiness itself.

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